April is Parkinson’s Disease awareness month.
When people I know find out I have early onset PD, they often ask a lot of questions about the disease and what it means for me. Sometimes they tear up or tell me they’re sorry as they learn more about the prognosis. It’s a natural, kind-hearted reaction. But I have to tell them that while I’ve grieved certain things and certainly have days when I struggle, I’m not sad or sorry. It’s been probably the hardest but also the best thing that has ever happened to me.
Mine is the less common akinetic-rigid kind, so I don’t have much of the tremors that people commonly associate with PD. Instead my body sort of locks up into a hard, crampy, awkward statue and I. Just. Can’t. Move. Right. Can’t smile, can’t turn my head (this is really unnerving for the poor person sitting next to me in a car or at dinner), can’t wiggle my toes. My walk starts to look like the Tin Man. For the past two years, much of the time I’ve had the luxury of taking a little vacation from this because there is a medication called levodopa-carbidopa that reduces the symptoms. While I’m grateful for it, it only lasts a few hours and you build up a tolerance fairly quickly. When I started taking it I could get 4 hours out of a dose. 2 years later it’s down to a little over 2 hours. For some people who’ve been on it for years, it only lasts 15 minutes, and pretty severe side effects come with it. PD is degenerative (caused by the loss of certain cells in the brain that produce a chemical called dopamine) and there is no known cure. The medication does nothing to slow its march through the brain. Although not considered terminal, PD kills more people in the U.S. than AIDS.
That’s the heavy stuff. But you know what? We all die. You, my friend, reading this post, will die too. Had PD never found me, I still would have succumbed to something sooner or later. But I’m not sure if I would have truly lived.
We live in such a fast-paced world. We’re pressured to work all the time, accomplish all the time and keep up with everyone else’s carefully curated life feed all the time. Oh, you don’t make your own organic kale and chia seed smoothies every morning? You don’t have a tiny nose and invisible pores? You don’t blog? You can’t quote Buddha, Nietsche or Marx on command? You don’t wake up looking radiant with artfully mussed hair and perfect lighting every morning (#nomakeup #nofilter)? You haven’t made 98% of the things you’ve pinned on Pinterest? You don’t have a new designer handbag? You haven’t posted a snarky yet impressively witty observation this week? Your furniture isn’t from Pottery Barn? You don’t drive an Audi? You haven’t lost those last 10 pounds?
Who the fuck cares?
Are you happy?
Would you be happy even if you did do all of those things? Have they ever, in your entire life, even once made you truly happy?
And that’s why this is the best thing that’s ever happened to me. I know that I will likely live to see myself lose the ability to run, walk, paint, craft, talk, hug and smile. Making peace with that has helped me to understand that there’s a difference between being living and being alive. It made me see that time is a perishable commodity. None of us can flip the hourglass back over once it’s started. To choose one thing is to choose to forego another. What is worth sacrificing for?
For me it came down to the moments that echo in my heart. Sharing a victory with our team at ET. Being there for a friend in need. Running with the wind in my hair. My wonderful, amazing family. Taking my dog to the park. Being in love. Making something beautiful. Everything else is secondary. And I’m not sorry.
The main thing I can tell you about my experience with early onset PD is that I’m pretty sure it isn’t all that different from anything you are going through right now. Everyone has challenges. Everyone has limitations. Everyone has to make choices with what to do with their finite, perishable, precious, beautiful life.
I hope you choose what echoes in your heart.